In December of 2016 we discovered our 6 year (4 at the time) old son has many CCMs scattered throughout his brain. He underwent surgery in December to remove a golf ball size CCM from his cerebellum and again in June 2017. Through genetic testing we also found out Edgar and Elan have the CCM1 genetic mutation.
As of right now, there is no cure, no treatment other than surgery, just management of symptoms as they come. Surgery should not be the only optoin and no parent should have to have their screaming scared child pulled from their arms for surgery, not knowing if you'll have the same child when the procedure is done. All we know is the surgery was necessary to save his life.
Living everyday knowing our little boy has an incurable disease and being unable to change that is difficult. CCMs are hard to manage. There are many unknowns, unanswerable questions we deal with. Angioma Alliance is our hope for these answers. They lead the way in discovering a cure, better treatment options, and resources for those dealing with CCM's. Please consider helping us raise money towards a cure.
ANGIOMA ALLIANCE wrote - REGISTRATION IS FREE! RECEIVE A T-SHIRT IF YOU DONATE/RAISE A MINIMUM OF $35! SIGN UP TODAY AND CREATE YOUR FUNDRAISING WEBPAGE! GET INVOLVED! Join us as we raise funds and awareness for those affected by cavernous angioma at this walk/5K fun run. Come out out to celebrate this year's theme, Camo For a Cause! We are currently recruiting for committee members, sponsors and in-kind donations of food and beverages and auction and raffle items. Reach out to email@example.com to find out more!